Have you ever heard of
Nightingale’s Disease? It is a disease described in the late 1800s by Florence
Nightingale, who herself suffered from it. It is a potentially-fatal,
multi-systemic disease that involves almost every organ system in the body,
including the central and peripheral nervous system, the autonomic nervous
system that controls things like blood pressure and heart rate, the musculoskeletal
system, the skin, the immune system, the heart and blood vessels, multiple
endocrine glands, the gastrointestinal system, and bladder. Patients with
Nightingale’s disease are two to three times as likely as others their own age to
die of heart disease, as well as four times as likely to die of liver disease,
and ten times as likely to die of suicide. It affects both sexes at any age. In
fact, 10-20% of cases start in childhood, potentially leading to a life-time of
suffering and early death.
There’s one more thing about
Nightingale’s Disease you should know: I’m the only one who calls it that. Most
everyone else calls it fibromyalgia, or fibrositis, or chronic pain disease, or
depression, or a crock of #%&@!
Why do I now want to call it
Nightingale’s Disease? First of all, I hate the name fibromyalgia for several
reasons, starting with the fact that no one can bloody well spell or pronounce
it — Fibro-my-lasia? Fibro-my-laxis? Fibro-myfeetgrow? Other big reasons are (1)
it is totally inaccurate; (2) it totally belittles the seriousness of this
condition, by focussing only on the muscle pain; and (3) too many doctors and
others treat fibromyalgia like a smelly, wet sock found in a puddle under their
car; they want it gone but definitely don’t want to touch it.
Let’s start at the beginning: Why do I call the name ‘fibromyalgia’ inaccurate? The name means ‘pain in muscles and fibrous tissues’. It is considered by many doctors, scientists and cross-eyed milkmen to be an improvement over the older name ‘fibrositis’, which meant ‘inflammation in fibrous tissues’, because research has failed to identify any such inflammation under a microscope. First of all, in a recent on-line poll, over 340 individuals suffering from the condition were asked to name their worst symptom. Guess what it was? It wasn’t pain, which only was named by 26% (that’s one in four). Look below and you’ll see what it was:
Let’s start at the beginning: Why do I call the name ‘fibromyalgia’ inaccurate? The name means ‘pain in muscles and fibrous tissues’. It is considered by many doctors, scientists and cross-eyed milkmen to be an improvement over the older name ‘fibrositis’, which meant ‘inflammation in fibrous tissues’, because research has failed to identify any such inflammation under a microscope. First of all, in a recent on-line poll, over 340 individuals suffering from the condition were asked to name their worst symptom. Guess what it was? It wasn’t pain, which only was named by 26% (that’s one in four). Look below and you’ll see what it was:
The worst symptom, reported
by almost half (42%), couldn’t be named because there was more than one. In
other words, there were multiple symptoms.
In another, much larger general population study published in major scientific
and medical journals almost a decade ago, pain was rated as a major problem 75%
of the time, but so were fatigue and sleeplessness, with mental cloudiness,
headaches and a host of other symptoms right behind them. This brings me to my second major objection
to the name ‘fibromyalgia’: it belittles the condition woefully. Think back —
how many of you with fibromyalgia have been told, at some point, that ‘at least
it won’t kill you’? Maybe it was your doctor. Maybe it was your partner. Maybe
it was that cross-eyed milkman I mentioned earlier. But in a recently published
study conducted in Denmark, people with fibromyalgia were significantly more likely to die from heart disease, liver disease,
and suicide. And, the last time I checked, suicide is a form of death. “Don’t worry, son. Your mom isn’t dead. She
just killed herself.” Really?
The name also horrifically
belittles the multi-systemic nature of the disease. Under a microscope,
researchers have discovered that the immune cells don’t function properly in
people with fibromyalgia; that high thyroid levels double to triple your chance
of having it; that high prolactin levels multiply that likelihood more than
twenty times; that cortisol levels are all out of whack (high when they should
be low, and vice versa); that the normal night time surge in growth hormone
levels is diminished or gone; that conduction of skin temperature is all goofed
up; that certain brain cells are gone and brain chemicals like serotonin and
Substance P aren’t produced and released properly by the cells that remain;
among other things. The name fibromyalgia implies that this disorder just
affects muscles and fibrous tissues like tendons and ligaments. But that is a
tragic error that completely loses sight of the all-encompassing nature of this
disease.
Finally, too many doctors and
others already know to duck (and/or hide) when they hear any word that starts
with ‘fibro’. Or to put their shields
UP!!!
So let’s go with
Nightingale’s Disease. I can give you five good reasons. First, most people
won’t have a clue what it is, so you can have a fresh start.
Second, it sounds more
official and (a big plus) has the name ‘disease’ in it. Too many critics get
all tingly and warm inside calling it ‘a syndrome, not a disease’, as if that
delegitimizes it. Of course, don’t tell the parents of a Down’s syndrome child,
or anyone with Turner’s disease, or anyone treating the Syndrome of
Inappropriate Anti-Diuretic Hormone (SIADH) or any one of the hundreds of
genetic, chromosomally-induced disorders listed in any medical dictionary that
syndromes aren’t real.
Third, the more accurate name
— chronic potentially-debilitating multi-systemic neuro-dermo-immuno-musculo-cardio-gastro-uro
endocrine/neuro-endocrine dysfunction disorder (CPDMSNDIMCGUENEDD for short) — is
at least 25 syllables too long. (And people think fibromyalgia is hard to spell
and say.)
Fourth, Florence Nightingale
had it in the 1880s, LONG before there were the so-called ‘overgenerous
compensation systems’ some critics claim all fibro patients are trying to milk
for easy money. And she developed it
while working in some place like India, not in some compensation-spoiled
Western country like Bangladesh (which is, by the way, the country in the world
where fibromyalgia is currently most common).
And fifth, because it was Florence
Nightingale — the mother of modern nursing, who graduating nurses around the
world say a pledge to when they graduate from nursing school, and who is
honoured once every year on International Nurses Day — who had this condition
we now call fibromyalgia and first recorded it. Why, by the way, is she so
highly revered? Because she was a meticulous note-taker, whose records were
among the very first to document the risks of spreading germs and thereby was
instrumental in the development of current sterile techniques that are used by
everyone from nurses to brain surgeons; who was considered a war hero for her
tireless efforts during the Crimean War (talk about the world going full
circle); and whose social reforms included improving healthcare for all of society, improving heathcare and advocating for better hunger relief in India, helping to abolish unfair laws against women, and expanding acceptable forms of female participation in the workforce. And among her oh-so-meticulous records was her very own diary, in which she documented the chronic widespread pain, fatigue and mental cloudiness she suffered over the last 40 or so years of her life.
So - if we believe her notes about germs, and recognize her brilliance and tireless efforts in so many areas, we don't we believe her diary? Almost certainly, she had fibromyalgia.
And that's why we should maybe ditch the name fibromyalgia and call it Nightingale's Disease instead, or perhaps even Florence Nightingale's Disease; just like amytrophic lateral sclerosis is now named Lou Gehrig’s Disease after the famous and highly-respected baseball player who died from it.
So - if we believe her notes about germs, and recognize her brilliance and tireless efforts in so many areas, we don't we believe her diary? Almost certainly, she had fibromyalgia.
And that's why we should maybe ditch the name fibromyalgia and call it Nightingale's Disease instead, or perhaps even Florence Nightingale's Disease; just like amytrophic lateral sclerosis is now named Lou Gehrig’s Disease after the famous and highly-respected baseball player who died from it.
Why not? Maybe with a
different name, people will start giving fibromyalgia at least some of the
credit it deserves.
Kevin White, MD, PhD,
multiple award-winning researcher, author, teacher & speaker
Multiple award-winning author
of
